I was on Plaquenil for over 20 years before developing retinopathy from it. Hopefully, yours was caught in time. It won't progress once you stop taking it. It is generally not reversible. Please speak with your ophthalmologist or retina specialist for further confirmation. Let your rheumatologist know that you developed retinopathy so you can discuss a new treatment plan.
6 days ago (edited)
First, 15 years of diligent eye exams shows real dedication to managing lupus safely — that truly matters.
There's no universal time limit for hydroxychloroquine, but the risk of retinal damage does increase with long-term use and higher doses. Risk factors that can make retinopathy more likely include:
- Taking more than Show Full Answer
First, 15 years of diligent eye exams shows real dedication to managing lupus safely — that truly matters.
There's no universal time limit for hydroxychloroquine, but the risk of retinal damage does increase with long-term use and higher doses. Risk factors that can make retinopathy more likely include:
- Taking more than 400mg daily
- Using it for longer than five years
- Reduced kidney function
- Being over 60
- Having a history of retinal disease
- Taking other medications that can affect the retina Regarding vision recovery — unfortunately, hydroxychloroquine-related retinal damage is generally considered permanent and may not fully reverse after stopping the medication. This is why early detection through regular eye exams is so critical.
The good news is that stopping the medication can help prevent further damage from progressing. It's really important to have an open conversation with both your rheumatologist and an ophthalmologist or retinologist about next steps. They can monitor any changes closely and help adjust your lupus treatment plan to replace hydroxychloroquine if needed.
Please don't stop taking it without guidance from your doctor, as stopping abruptly can trigger lupus flares.
6 days ago
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